01 December 2016

Looking Back at November

Disney On Ice

Thank you to all who came to see Disney on Ice with us! Your support helped raise almost $1000 for Hayden’s Heart! The seats were great and the show was captivating! We look forward to hosting more events like this in the future and hope you can join us!

Holiday Cheer Care Packages

Thank you to everyone who donated items for our care packages! Because of the overwhelming amount of support and donations, we are able to extend to one more pediatric cardiac unit this year at Boston Children’s! So with your help, we will be sending some ‘Holiday Cheer’ to 75 heart families in the hospital this season in honor and memory of Hayden!

Special thanks to Jen McIlvaine, her family and colleagues for donating generously of their funds and time in honor and memory of her heart angel, Liam and in honor of his 5th birthday.

(photo below of Liam, and of my sweet niece delivering ‘Holiday Cheer’ to the heart families at Geisinger Medical in Pennsylvania)

#givingtuesday

And finally, thank you for choosing to show your Hayden’s Heart LOVE on #givingtuesday! We are honored and humbled by your support in our mission to help heart families in need! THANK YOU!!

SAVE THE DATE!

14 November 2016

#haydenshouseofhealingneedsellen

Just a few weeks ago at our ‘Heart of Gold’ Gala, I shared a video launching a new initiative to continue our mission in supporting families affected by CHD. This project is a passion and dream of mine and I want more than anything to make it come true.

‘Hayden’s House of Healing’ is in the beginning stages and my hope with this project is to someday build our own retreat house on the east coast. The mission behind this project is to provide a safe, tranquil space for bereaved mothers, couples and families to heal and connect together through a variety of methods and activities offered to assist in the healing process.

This dream came about a few months ago during the planning stages of our second ‘Healing of the Heart’ retreat for mamas of heart angels. While prepping for that weekend I found myself feeling so full of purpose and so excited to host these mothers for a weekend that would hopefully be as impactful and as life-changing as the first one we hosted just over a year ago.

The passion and drive I have for this event is hard to put into words. We provide these mothers with an experience that money just cannot buy. The connections and bonds that form over the 3 days together is simply astounding. We give these mothers back a piece of themselves; a piece of their child and a sense of belonging that is so desperately needed as a bereaved mother.

My dream with having our own space is to host this retreat but also host retreats for bereaved couples, families, dads and siblings. Seeing and experiencing first hand what this weekend can do for the healing process makes me know this house is Hayden’s next big project for me. I know that this may take several years but I do truly believe that with your help and my passion, it WILL happen.

How can you help make this dream come true??

1. GET HHOH ON ELLEN!!!! What better way to spread awareness for this project than to be on the Ellen Show?!?! We would LOVE to have you tell Ellen about our dream- here is a link to the place you can share our project!http://www.ellentv.com/be-on-the-show/1150/

Please tell her why you want to help make our dream come true and post this YouTube link of the video we created to release the project. https://youtu.be/9cmAryu8lnI

Please use the hashtag #haydenshouseofhealingneedsellen

2. SHARE this video- this blog- this DREAM with anyone who may want to help us in our mission!!

13 November 2016

Fighting the Heart War with Love in 2016

This past October we celebrated FOUR YEARS!!! Four incredibly growing years. It is said it can take 3-5 years for a business to truly find its way and I would definitely agree with that timeline. We held our annual board meeting a couple weeks ago and reliving the past four years- how far we've come- how many families we've helped- I can't begin to explain how proud I am and how thankful I am for all of you who have supported us- who have made Hayden's Heart what it is today.

Our first event was in December of 2012- just about 4 months after Hayden died. My first Christmas without him- which would have been my first with him had he been alive- was looming and I am pretty sure I was able to continue putting one foot in front of the other because I knew we were doing something good in Hayden's name. That first event was held for Weston Keeton- who now celebrates his birthdays and holidays in heaven with Hayden, but at the time he was fighting hard and had been for a while. We raised almost $4,000 at that event and we were thrilled! We gave every cent to the Keeton family and from that moment on, I never looked back.

The first two years were tough- we wanted to give each family as much as we could so we rarely had money left over from events to prepare for the next. The first 5K- and I'm pretty sure the second- we paid for the shirts, the trophies etc with our own money. We paid ourselves back in time, but with the foundation, we were struggling to make ends meet. We had no savings account, we- my husband, sister, and best friends- just kept going and doing- all desperate to help me keep moving forward- desperate to help me do whatever it took to honor Hayden.

This year we celebrated four years for Hayden's Heart. How far we have come in just a few short years! Looking back at year one and two seems so far away- and sharing memories with board members who have been there since day one is nostalgic- we laugh and cry at the leaps and bounds we've made- all in Haydens name and all because of our dedicated board members and supporters.

Some quick facts on how YOUR support and donations directly impacted the heart community in 2016:

*We hosted FIVE major events and sent significant monetary donations to FIVE heart warrior families.

* Donated $10K in 'immediate relief' funding to over 10 families throughout the year. This is money we send to heart families who are in immediate need of some financial relief for unexpected reasons- whether it be for hospital stays, medical bills, funeral costs and more.

* 70 Grieving Hearts care packages were mailed out to recently grieving heart families and provided them with comfort and support amidst their tragedy.

* 180 care packages were gifted to four different pediatric cardiac hospitals in honor and memory of Hayden (60 for his birthday, 60 for his angel day, and 60 for the holidays)

*SPREADING AWARENESS DAILY for Congenital Heart Defects- through some things as simple as our social media posts, to passing our information cards out to strangers, car washes, delivering Hayden's signature swaddles out to other heart hospitals, and much more.

What's happening in 2017!

*In January, we will be releasing our newest project that will directly affect our bereaved community- Stay tuned for more details on 'Hayden's Holiday' coming soon!

*February will start our CHD AWARENESS Campaign!! Its gonna be FuN-ImPACtfUl- eXCiTiNg-eMbArAsSinG- and we CAN'T WAIT!!!

*We will host 5 major events- each honoring a warrior heart family. More information will be posted on our website but here is a quick glance:
- Our 5th Annual 5K Birthday Bash for Hayden - SuPerHeRo Style!! March 18th!
- We will be teaming up with 'Madison Strong' this year for our NJ Golf Tournament -
happening early June!
- PA Golf is set for July 28th- back at White Deer!
- A kid-family event will be happening in Northern NJ in October!
- 'Heart to Heart' Gala on November 18th at Herman and Luthers in Pennsylvania!

*We will be extending our care packages to Boston Children's Hospital in 2017- looking forward to starting a partnership with this incredible care center!

* Grieving Hearts will continue to add new gifts for our bereaved parents and siblings. Up first is an emotional, yet inspiring video by Luminous Light Studio and interactive grieving books for siblings.

*Our 3rd 'Healing of the Heart' retreat is set for July 13-16th- information and application packets will be released in January and we anticipate life-altering healing to take place yet again for these bereaved mamas.

*We will continue to have a budget of $10K in immediate relief funds for our heart families to distribute throughout the year.

There is more in store for 2017 and we can't wait to share it with you! If this list of amazing contributions to the heart community inspires you to want to help in a more direct role with Hayden's Heart, please email ady.dorsett@haydensheart.org - we would be delighted to have you!
OR
If you wish to donate, please visit our CONTRIBUTE page for more information!!

THANK YOU from the depths for all you have done thus far to support us in our mission to honor and remember Hayden through the work we do for our heart community. We look forward to another year of FIGHTING THE HEART WAR WITH LOVE!

31 October 2016

Disney On Ice

Save the Date

Our 5th Annual 5K Birthday Bash for Hayden is set for SATURDAY MARCH 18th! For Hayden’s 5th birthday, we will celebrate in SUPERHERO STYLE! Come dressed as your favorite super hero and join us in celebrating Hayden’s 5th birthday! More information coming soon on our website.

Hayden’s House of Healing

Last month we announced a new initiative through Hayden’s Heart- Project ‘Hayden’s House of Healing’. We are in the beginning stages of this project and are looking for grant writers to join our team. Please email ady.dorsett@haydensheart.org if you or someone you know may be interested in helping us! For more information on this project, please visit the CONTRIBUTE page of our website (www.haydensheart.org)

Holiday Cheer Care Pacakges

Our ‘Holiday Cheer’ care package collection is underway! These care packages encompass the whole family- items for a baby, toddler, and parents. Please visit our Amazon Wish-list below if you would like to help us in filling these care packages for heart families spending time in the pediatric cardiac hospitals over the holidays. We will be sending these out to four hospitals mid December! Thank you, as always, for your support!!!

The first Inaugural ‘Heart of Gold’ Gala held on September 30th was extraordinary- and not just for me, but for all who were there to witness the magic. The room was filled with so many beautiful people- and so much love for Hayden and for his legacy.

It was a night to remember- a night I will never forget. As it got closer to the start of the event, I felt a sense of calming come over me- I knew before it even started it would be a success. Over a year in planning and a month of crunch time- it had all paid off as I looked around the room and saw the beauty of my surroundings. Our committee put so much time and love into every part of the evening and it showed.

Our guests arrived looking just as stunning as the room was. The 150 ‘Golden Chance’ boxes, 97 Silent Auction items and the nine Live Auction items along with four hours of open bar and never ending delicious food kept them busy, feeling full, and excited to walk away with a prize all in support of Hayden’s Heart.

When planning started for this event, we wanted to be sure to honor the entire cardiac community. We wanted a portion of the proceeds to benefit a heart family like all of our events do, but we also wanted to honor a doctor who showed excellence and dedication in the pediatric cardiology field. When I asked our heart community a year ago to submit nominations for this award, Dr. Ravishankar came in with several families choosing her as the best fit to receive the honor. The choice was clear. My fellow heart mom and dear friend Jackie Ross helped to present this award and the raw emotion and truth in her speech was just astounding. It was such a treat to have our honoree and her guests with us as part of this inaugural event.

Rob and I prepared two videos for the evening. The first was to give a short glimpse into what Hayden’s Heart is all about- how and why it was formed, who we support and how we make it all happen. The second was an introduction to a new initiative Hayden’s Heart is backing- a vision and a dream- a passion for me personally- Project ‘Hayden’s House of Healing’- a retreat home of our own to serve and support our bereaved mothers and families.

The emotions that circled these two videos are where I loose my wording. I don’t know if I will ever be able to properly convey what I felt when I looked around the room after the first and then more so the second video ended. Tears- smiles- cheers- support- all around us. Breathtaking. Overwhelming. Humbling. One of the top moments of my entire life. All for Hayden- all because of the legacy he left behind and holds my hand through each and every day.

This event, like so many other parts of Hayden’s Heart was more perfect and more successful than we imagined. It brought together so many generous and beautiful people and I am honored to have spent the evening with them. Thank you all for having a part in this magical evening- one I will revel in for years to come.

01 September 2016

Looking Back at August

The week of August 16th we delivered a total of 60 care packages to the pediatric cardiac units at four Children's hospitals on the east coast in honor and memory of Hayden's angel day.

THANK YOU to all of you who quickly chimed in with support and filled our Amazon wishlist within just two weeks- without you this would not have been possible!!

THANK YOU to our local girl scout troop and their incredible leader Melaine Curcio for compiling the bags- the girls did amazing- very efficient and in record time!!

And lastly, THANK YOU to our ladies who helped get the bags in the right hands to make sure we put some smiles on some cardiac kids in honor of sweet Hayden.

‘Healing of the Heart' Retreat

How can I even put into words what this weekend meant to those in attendance. As a host, or core team leader as we called ourselves, all I wanted was for these new 25 moms to leave this weekend with the same sense of belonging that we all did from the first retreat that took place just under a year ago. I wanted them to have the most intimate- raw- and REAL experience possible. I wanted them to open up- cry- laugh- dance- and cry again. I wanted them to connect- heal- feel safe- and leave with a sisterhood that would forever change the rest of their lives- the rest of their journey through grief.

The first night was more than emotional- hearing all about each one of these angels- when and how they were welcomed into this world, how they spent their way- too- short of lives, and then ultimately how they died- and watching what their deaths left behind. They left behind a beautiful mother who is shattered internally and externally- a courageous mother who is not only still standing, but somehow found a way to bring herself to a retreat where she knows no one- but trusted in us to handle and care for the most precious and intimate part of her life. A broken soul- whose life would be so much more full if only her baby were still alive- if only we could turn back time and change each and every path of these mothers lives. But I can’t. We can’t- they can’t. And so because of this the only thing we can do is walk through this path together- hand in hand- hearts intertwined. A sense of belonging- a sense of understanding- a no judgment zone where its ok to cry so hard you can be heard across the mountains- and then moments later dancing like a fool to a rap song from the 90’s.

This years retreat was so much more than I ever could have imagined it would be for these women. Watching their transformation over the 4 days we spent together is something I simply cannot put into words. Watching as their smiles changed from fake and weak, to real and strong. The joy and peace that is in my heart watching their connections grow stronger, their hearts healing- if even just a little bit- their weights being lifted- their acknowledgment that never again will they feel alone in this world. This weekend is more powerful that words could ever do justice. This weekend brought us back to life. It brought our children back to life.

Of all things I do in Hayden’s name, this is by far the most impactful. This retreat not only gives these mothers back a piece of themselves they were so desperately searching for, it gives that same person back to their surviving family. I am so honored to be able to create such a safe, tranquil space for these most deserving women whom I will forever be connected to and will always consider my sisters.

Special thanks to my CORE team who held my hand and walked alongside me through the last 8 months planning the perfect weekend for these mamas. And to the many heart organizations and families who sponsored a mother to attend- what a gift you have just given a grieving mother and her family. So many people donated items for welcome bags, snacks, desserts, and money to fund the memorial projects and other special workshops and activities we were able to hold. It is because of you that this weekend was able to happen- you allowed myself and the rest of the core team to live out our vision for these mothers and we are forever grateful for your support.

4th Annual Blood Drive!

THANK YOU to everyone who donated to our 4th annual blood drive in honor of Hayden!! This year we collected 40 pints- INCREDIBLE!!

Such a selfless, life-saving act- we can’t thank you enough!!

Keep a look out for our 5th annual next August!

Workout With a Cause!

Thank you to Tony Gomez and VIP Fitness in Lyndhurst for hosting ‘Workout with a Cause’ for Hayden’s Heart this month!!

How exciting to have 11 people working out this month for Hayden- raising $600- and helping us in our mission with ‘Fighting the Heart War with Love’.

Good luck to all of those working out for Hayden this month- so amazing!!

28 August 2016

Healing of the Heart 2016- how can I even put into words what this weekend meant to those in attendance. As a host, or core team leader as we called ourselves, all I wanted was for these new 25 moms to leave this weekend with the same sense of belonging that we all did from the first retreat that took place just under a year ago. I wanted them to have the most intimate- raw- and REAL experience possible. I wanted them to open up- cry- laugh- dance- and cry again. I wanted them to connect- heal- feel safe- and leave with a sisterhood that would forever change the rest of their lives- the rest of their journey through grief.

The first night was more than emotional- hearing about each one of these angels- when and how they were welcomed into this world, how they spent their way- too- short of lives, and then ultimately how they died- and watching what their deaths left behind. They left behind a beautiful mother who is shattered internally and externally- a courageous mother who is not only still standing, but somehow found a way to bring herself to a retreat where she knows no one- but trusted in us to handle and care for the most precious and intimate part of her life. A broken soul- whose life would be so much more full if only her baby were still alive- if only we could turn back time and change each and every path of these mothers lives. But I can’t. We can’t- they can’t. And so because of this the only thing we can do is walk through this path together- hand in hand- hearts intertwined. A sense of belonging- a sense of understanding- a no judgment zone where its ok to cry so hard you can be heard across the mountains- and then moments later, dancing like a fool to a rap song from the 90’s.

This years retreat was so much more than I ever could have imagined it would be for these women. Watching their transformation over the 4 days we spent together is something I simply cannot put into words. Watching as their smiles changed from fake and weak, to real and strong. The joy and peace that is in my heart watching their connections grow stronger, their hearts healing- if even just a little bit- their weights being lifted- their acknowledgment that never again will they feel alone in this world. This weekend is more powerful that words could ever do justice. This weekend brought us back to life. It brought our children back to life.

Of all things I do in Hayden’s name, this is by far the most impactful. This retreat not only gives these mothers back a piece of themselves they were so desperately searching for, it gives that same person back to their surviving family. I am so honored to be able to create such a safe, tranquil space for these most deserving women whom I will forever be connected to and will always consider my sisters.

Special thanks to my CORE team who held my hand and walked alongside me through the last 8 months planning the perfect weekend for these mamas. And to the many heart organizations and families who sponsored a mother to attend- what a gift you have just given a grieving mother and her family. So many people donated items for welcome bags, snacks, desserts, and money to fund the memorial projects and other special workshops and activities we were able to hold. It is because of you that this weekend was able to happen- you allowed myself and the rest of the core team to live out our vision for these mothers and we are forever grateful for your support.

16 August 2016

Oh sweet Hayden...

Its been four years since I last held your tiny hand, kissed your swollen face, and held your lifeless body in my tired arms. The day we said our goodbyes to you will always be the saddest, most tragic day of my life. I still remember that day like it were yesterday. I remember feeling like I must be in a nightmare- this couldn't possibly be my life now. I had no idea how I would live without you or how it would change every part of me. How loosing you would alter me so intensely. How every day I wake up and you are still the first thing on my mind. Sometimes I smile, sometimes I cry- but I always, always think of you.

I think of your smile, your eyes- your sweet little body laying next to me. Your little legs kicking and your arms going- your excitement at the start of a new day together.

I think about how old you would be now- if you were still here. You would be four (almost four and a half!) years old- would you still have that same infectious smile and soulful eyes? Would you wake each day with the same excitement as you did when you were a baby? My mind always says yes... You would love the simple life we live- spending most of our days in this house just playing and being together.

If time allows, I start to reflect on the life you did have- the good, and the bad. The days we spent at CHOP- just me and you- and all of your care takers, of course. Those days are oddly my favorite to look back on. While most were hard, and at the time I hated being in that place, they are what I think back on most and smile. We spent so many hours just sitting together, listening to Sara Groves, or lullabies we grew to love. I'd just hold you for hours on end- talking to you, snuggling with you- singing to you. Doctors and nurses would come and go- but otherwise we were on our own planet in there together. We'd play with your favorite toys- work on your tracking and wait as patiently as we could until daddy and Jackson would come to see us on the weekends.

Jackson was the coolest person in the world in your eyes. I have so many memories of you just watching him play and talk and you just smiling up at him. The love you had for each other was mutual- and so beautiful. He couldn't wait to play with you- he had it all planned out. He still sometimes talks about how much he misses you- his playmate. And if possible, my heart breaks a little more every time he brings it up.

Your little brothers know you well- we make sure of that. Hudson includes you in everything we do- we sing songs with all our families names- and he always adds you. Whenever we talk about going some place, he always asks if you will be there too- and our response is always the same 'Hayden is always with us'. We say that because not only do we truly believe it, we also feel it. Greyson is learning all about you, too. He sleeps in your cove in our room, and every time he wakes from a nap, we pause at your big photos and say hi to you- he smiles so big and reaches out to touch your face- every single time.

Its strange living a life without you in it. Even though you only existed on this earth for 5 months and 4 days, you left such an incredible impact on my heart and without your physical presence, life often feels voided. But you have gifted me so many wonderful things, I often feel guilty when I have my own personal pity parties. Life is so full around here- between your brothers and your foundation- our hands are full- but my heart just isn't. Although time has healed some wounds like so many said it would, the void without you here seems to never go away.

Sometimes I feel like you were all just this great big beautiful dream- were you real?

Of course you were real- you are real. You are my second child- my hero, the boy who fought so hard to stay here in my arms.

Reliving the last three days of your life is pure torture- year after year. The memories of those events haunts me so deeply- I can't escape it. I still can't figure out God's plan- though I am desperately trying to.

I remember the extreme pain that started inside of me the day your code went off. I never knew a pain like that existed. Every time I look back on that night I see myself in a ball on the floor in that hallway screaming-the start of my real- life nightmare.

And then a different, deeper pain filled me the night before you died when I tried everything I could to get your EEG to show some sign of life. Your fathers' face and shaking his head 'no' is another visual that I just can't get out of my head. Defeat. We had lost. It was then that I realized it was over- you were gone. Just like that, you were gone.

The day you left this earth an even deeper pain filled me, one that is still inside of me and will always remain, this I am sure of. A pain so intense, so excruciating, I still to this day cannot believe I survived it. No doubt I have your brother and daddy to thank for that.

Walking out of that hospital without you left my insides on fire. That fire is re-lit whenever I put myself back in that moment. Another visual of me collapsing in the hallway wailing for my baby. Your nurse holding you on the other side- probably sobbing too. It all just seems so unreal- an impossible reality that yet somehow is. I am still trying to figure out why a mother should ever be asked to live a life without her child. Where is the surgical process to fix MY half a heart?? There isn't one- because its impossible to fix.

Four years ago today my life and everything after it was drastically altered- and not in ways I planned for. I wish I could go back in time and change it all- change what happened to you- to us. What I wouldn't do to change it...

But since I can't...

Thank you. Thank you for choosing me. Thank you for bringing me such purpose in life and teaching me the value and meaning to my life. Thank you for teaching others those same values and meaning. Thank you for making me a better mother. Thank you for continuing to show us your love through the signs you send to us and those around us. Thank you for guiding me in your legacy and pushing me in the right directions. Thank you for giving me the strength to survive this awful tragedy that has happened to our family. Thank you for being my hero and my inspiration. Thank you for choosing me...

01 August 2016

Looking Back at July- Golf Outings

Thanks to all who participated and supported our 3rd Annual New Jersey golf outing at Preakness Valley Golf Course last Friday July 15th, honoring and benefiting Lena Gonzalez and family!

What a beautiful and HOT day we had with almost 60 golfers and over 15 sponsors- making this yet another successful event! It’s so nice to have so many of our golfers return each year- and a bonus when some new join us as well! Thanks again for spending your day with us! (Full list of sponsors listed on last page of newsletter)

It is because of your support that allows us to carry out our mission in Hayden’s name- THANK YOU!!!

On Friday July 22nd, we hosted our 4th Annual PA golf outing at Wynding Brook honoring and benefiting Hope Goulet and family from Yakima, Washington.

It was another HOT day, but beautiful weather once again! It was so nice to see so many of the same supporters there for four years in a row- and some new faces too! Thanks to all who golfed with us - we had almost 80 golfers and a handful of sponsors who made this year successful - and lots of fun!

Shout out to our PA board members- Tatum, Becky and Shannan for running this event- we are so thankful to you for your love and dedication to Hayden and our mission!

AUGUST events!

4th Annual Blood Drive!

In just a few days, we will be hosting our 4th Annual Blood drive in honor of Hayden- and in honor of all those who donated so that he could live the life he had.

Hayden received three blood transfusions throughout his short life and was on ECMO for three days before he passed (equal to approximately 20 transfusions). Without those transfusions, Hayden would not have survived- and without being on ECMO, our family would not have been able to give Hayden and the doctors time to try to save him, also giving us time to process as best we could, and say our goodbyes with him still alive in our arms.

This 'event' is so important and special to me because people are coming just to GIVE- not getting anything in return. The feeling I have and the emotions it brings as I see the room fill with both familiar faces and new supporters is just so wonderfully overwhelming- its hard to put into words.

Smile Sacs

THANK YOU to all who donated items for our ‘Smile Sacs’ again this year! This is the 4th year we have compiled care packages to deliver to pediatric cardiac units

on August 16th in honor and memory of Hayden and the last day I held him in my arms.

This year we are sending packages to Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Children’s Hospital of New York, and Geisinger Medical Center in Pennsylvania- totaling 60 care packages!! Stay tuned next month for pictures!

Workout With a Cause!

So excited to announce this incredible fundraiser hosted by VIP Fitness in Lyndhurst- all details are below or on their website:

THANK YOU!!

NEW JERSEY 2016 GOLF SPONSORS

PENNSYLVANIA 2016 GOLF SPONSORS

14 July 2016

‘A "Rainbow Baby” is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn’t mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.’

It seems a lot of grieving moms struggle with whether or not to have another baby. There are so many emotions tied into this, and personally I went through them all. Right after Hayden died I remember standing on my deck saying to my husband ‘I need to have another baby right now. We need to adopt a five-month-old right now’- and at that moment that’s exactly what I wanted. And I remember the next morning thinking I can never have a baby again. The fear of having another baby with a heart condition and possibly having them die was too overwhelming and not something I wanted to even consider. The first couple weeks to a month after he died my mind felt like a ping-pong ball- going back-and-forth between wanting a baby right that second and not wanting another child ever again.

My chest and body ached for him to fill the spot he always was in- and obviously I wanted a baby and just because I lost Hayden didn't mean I still didn't want a baby- I wanted him, no doubt- but still ached to be able to mother another child on earth.

A couple months after Hayden passed away I asked my husband what he thought about having another child. He was 100x more scared than I was -which was a lot considering I was scared to death. But, because he knew I needed and wanted it so badly, he agreed. However, I guess because of the stress of grieving, my body just wasn't ready. With my first two, we practically looked at each other and got pregnant. But with this one it was different. I ended up struggling for what would seem to an outsider a short period of time but struggling nonetheless to get pregnant. I finally decided to try acupuncture and after three months of treatment, I finally read the words ‘pregnant’ on that test. So, between the two months after he passed away the six months without any treatment and the three months with treatment, 11 months after we lost Hayden, I was pregnant with our first rainbow.

I remember reading the test and both of us literally saying ‘thank God we're finally pregnant’ but almost simultaneously, we thought ‘Shit were pregnant. Now what.’ Now we have to wait for 20 weeks. Now we wait, and see what happens. But it wasn't just waiting. It was full of anxiety and stress. Part of me wanted to believe that we had already seen our family tragedy. So, this baby was bound to be perfect in every sense of the word and we wouldn't have anything to worry about. But, the other part of me knew that there are some families that have more than one heart baby and unfortunately some that have more than one heart angel. And of course, families who have more than one child with a health issue- heart related or not.

So, for what felt like forever, we were in constant stress and anxiety and worry. We ended up going to see the cardiologist at 18 weeks because I just needed to do it as soon as they would allow. I'll never forget the moment she took that probe over my stomach and within three seconds she said loud and proud ‘FOUR CHAMBERS!!’ Those words still bring tears to my eyes typing this. At first, I didn’t believe her and said ‘how can you possibly know that so quickly?’ She happily showed it to us on the monitor. And, clear as day, there they were! Four perfectly formed chambers! We both cried such happy tears and were beyond relieved. But the second we got into the car, my tears made a shift. I couldn’t stop thinking about how I felt I had failed Hayden. I was beyond grateful that his older brother Jackson had already been cleared of a perfect heart and now his younger brother was given the same- so why not Hayden? Why couldn’t I have given that same gift to him? It was a painful ride home as I desperately tried to shift back over to the happiness that was first there at our appointment. Little did I know at the time that this would start the constant feeling of ‘bittersweet’ through every milestone and happy moment of my rainbows’ lives.

Unfortunately because of all we had been through, the settled and relieved feeling we felt in the doctors office that day faded. I was still incredibly anxious. The rest of the pregnancy I just kept waiting for the other shoe to drop. I kept waiting for them to find something else beyond the heart that would be wrong with him. I was afraid to believe and be naïve again and think that everything was going to be OK.

I remember the therapy sessions leading up to his birth. The focus was on our rainbow and how scared I was of how much I would love him. Fearful that because Hayden and I had a bond that was so rare and unique that I wouldn't feel it with my rainbow baby and therefore wouldn’t love him as much. I was afraid I would resent him. I was afraid I'd want him to be Hayden. I was scared to death of what was about to come. I wanted this baby no doubt, but started second-guessing my choices in having him so soon.

Those feelings lasted much of the rest of my pregnancy. There came a time that I had to acknowledge my real fears- I was afraid to love him and loose him. I was afraid to give my heart to him like I did to Hayden and have him die and leave me with another shattered heart. Once I allowed myself to admit that those feelings were the root to my fears, I was able to overcome them. I have always believed with Hayden that it was better to have loved and lost than to have never loved at all. And so with our rainbow, I would do the same. I would love him with all I had to give and if he too was taken from me, at least I know he would die knowing he was loved more than life- just like Hayden did.

Fast forward to his birth- the moment I laid eyes on him I never let him go. My husband always joked when we had Hayden and said he’d tell his surgeon once he was done with the Norwood, he might as well surgically attach him to my chest because that’s where he’d be until his next surgery. And now that same joke (minus the heart surgeries) started again with Hudson. He went everywhere with me- I never let him out of my sight. I slept with him, watched him nap, woke up in a panic several times a night to check his breathing, took him out to dinner with friends, everywhere I went, he went. The very few times I did leave him, I was a nervous wreck. I started going to the gym once or twice a week when he was around 6 months old. I was in spin class- music blaring, lights dimmed. I told Rob to text me when Hudson woke up from his nap. Well, of course he decided to take an extra long nap that afternoon but when I called Rob and he didn’t answer, I started to panic. I called again- still no answer. So, in about 15 seconds I had convinced myself that Hudson had died in his sleep and with tears streaming, I jumped off the spin bike halfway through class to rush home. I just about got out of the door and my phone rang- Hudson had just woken up. SIGH…. I caught my breath and sat there thinking how will I ever live without the fear of my children dying? What kind of a life is this??

Since having Hudson, we have also welcomed another rainbow, Greyson. His pregnancy wasn’t planned, so the stress throughout it was less- it took awhile for the shock of even being pregnant to ware off. But the anxiety kicked in full gear on the day he was born. I was laying on the table of my C-section with tears flowing out the corners of my eyes- once again scared to death that something was wrong. I must have asked my doctor 15 times if everything was ok. I was again convinced he was going to either be born dead, or something was going to be tragically wrong.

As grieving mothers, our emotions- every single one of them- are more intense – more real- raw- than ever before. We know bad things happen to good people. We know babies and children die. We are no longer naive, living in what seemed a perfect world at one point in our lives. And because of all of this, we love harder, cry harder, and fear harder than anyone else. Having my first rainbow was tough in so many ways, but having him also saved my life. He brought joy back into my broken soul. He is now just over 2 and I look at him with so much love and gratitude for what he has done for me. His smiles, laughs, even his tantrums bring joy to my heart. He is heaven sent- they both are. They both have pieces of their brother in them and I cant imagine where I would be today without them and their oldest brother, Jackson.

Deciding to have a rainbow, and then having them can be so magical- and can also bring heartache. My hope for you is that you allow yourself time to feel all the feelings your body wants you to process through this time. If nothing else, I hope you realize that whatever you are feeling, you are never alone…

06 July 2016

Lots Happening in July!

Kids Paint and Picnic in the Park

A Paint & Picnic in the Park Event is being held at the Pavilion #1 in the South Williamsport Complex on Sunday, July 10, 2016 1:00PM!! Please register using the number below by Friday!

Rainbows will be painted on a 10x20 canvas. Hayden’s Heart will be providing a picnic following the painting! Please arrive 15 minutes early to get signed in and aprons on the little ones. This is a NON-Alcoholic event.

Portion of ticket sales will be donated back to Hayden's Heart, Inc. Please contact Jodi Rakoski with any questions. 570-846-0993

Pennsylvania- Friday July 22nd

Price includes golf fees, cart, participants bag with Hayden’s Heart goodies, donuts and coffee, drinks on the course, and a luncheon and awards ceremony immediately after the close of the tournament!

Please email tatum.heiser@haydensheart.org to register!

4th Annual Blood Drive!

One month from today, we will be hosting our 4th Annual Blood drive in honor of Hayden- and in honor of all those who donated so that he could live the life he had.

Hayden received three blood transfusions throughout his short life and was on ECMO for three days before he passed (equal to approx 20 transfusions). Without those transfusions, Hayden would not have survived- and without being on ECMO, our family would not have been able to give Hayden and the doctors time to try to save him, also giving us time to process as best we could, and say our goodbyes with him still alive in our arms.

This 'event' is so important and special to me because people are coming just to GIVE- not getting anything in return. The feeling I have and the emotions it brings as I see the room fill with both familiar faces and new supporters is just so wonderfully overwhelming- its hard to put into words.

Smile Sacs

As much as I dread the month of August because it means Hayden's angelversary is upon us, I do look forward to sending 'Smile Sacs' to 60 kiddos in the cardiac units of four Children's Hospitals.
We would love your help in filling these bags- and sending some fun activities to the cardiac kids spending their summer in the hospital!

Please visit our Amazon Wishlist to purchase, we will be collecting through the month of July. Thank you to all who have supported us in filling these bags- so far over half of the items have already been purchased- AMAZING!!

Save the Date!

This event will honor pediatric cardiologist Dr Chitra Ravishankar from the Children’s Hospital of Philadelphia. Our committee is busy collecting amazing items for our silent and live auctions- this is an event you won’t want to miss!

Formal invitations are being mailed soon! If you would like to receive one and are not already on our address (NOT EMAIL) mailing list, please email Ady at ady.dorsett@haydensheart.org with your name and address and ‘GALA’ in the subject line- we will mail one out!